Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.

IZEA

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Saturday, June 2, 2012

Wow, I absolutely don't believe it's been so long since I've posted, but there is so much going on, mostly annoyances of all sizes. I am still waiting for a date for my "fair hearing", which doesn't guarantee reinstatement into Medicaid. I'm trying to see if Concepts can help. But they keep referring me back to the very supervisor at CASA who is covering up for the caseworker. Nevertheless, I am going to give her a call. Mind you, I owe my life to relay calling, but a relay call takes so much longer. The people at CASA claim they don't have email, but I find that hard to believe; they probably don't want to give out their email addresses because emails are so easy to hold onto and so easy to use in a "he said/she said" situation. But what they don't realize --shhh -- is when you make a relay call, the transcript of the call can be saved. Anyway, a well-meaning friend said she thinks "7 On Your Side" or "Shame on You" or some other broadcast ombudsman should be contacted, as well as local political figures. I replied " great idea. Care to make some phone calls for me?" Of course, everyone tells me how angry they are for me, they're sending prayers, keeping me in their thoughts, etc. etc. etc. , but of course, none of this means tangible assistance. I am trying to see if the disability activists can find a "pro bono" attorney. The social worker at the ALS clinic asks what she can do to help, and so I do have people in the field of health care who are expressing concern, so we have to see if this is more than lip service. I am "cautiously optimistic", but still scared. As for the media, those television people rarely go after government agencies. They are more into busting the sleazy contractor whom you paid in total up front, did half the work, and never came back, won't return phone calls, ignores your emails. My greatest fear is to never get a "fair hearing" date and suddenly be informed my Medicaid and home care have been discontinued.

I had two inexcusable "adventures" with Access-a-Ride last week that exhausted and pissed off my aide and I. I am immensely grateful that New York City has this service for people with disabilities, both permanent and temporary. But, few people understand that it's not a door-to-door limo service. You have to call one or two days in advance of the trip, and you can only do this between 7:00am and 5:00pm. So if your friend calls at 6:00pm and asks you to go somewhere the next day -- tough luck, Chuck!! Also they give you a time, but you have to give them a 30-minute cushion. So if they give you a pickup time of 11:30am, you have to give them until noon before you call the dispatcher to say they're late. When they pull up, there might be someone else on the bus that they need to drop off, and they may also do other pickups along the way. These other dropoffs and pickups don't have to be anywhere near you.

So last Monday, we had a 2:30pm pickup from my therapist on West 38th Street, and when no one showed up by 3:00pm, we called. The dispatcher said that we were marked as no-shows, which had to be a lie, because we were out in front at 2:15pm. So the dispatcher said we would have a "rescue" driver in 45 minutes. Now, I have a place to sit wherever I go [the advantage of being in a wheelchair], but there is no place to sit in the lobby of that building. So, already, my aide was standing 45 minutes, and had to look forward to standing another 45. Except that, by 3:45, still no access-a-ride. So we called again -- next estimate: 45 minutes more. That brought us to 4:30. Now we are up to two hours and 15 minutes my aide would be standing. She was understandably fuming. Access-a-Ride pulled up at 4:45 and there were two separate parties already on board, including one lady in a wheelchair. We dropped one group of two up in Harlem -- yes up to Harlem, after picking upp a lady and her aide at Mount Sinai Hospital in lower Harlem. The patient was in a wheelchair and yelled that she wanted to transfer into a seat, but all seats were taken. After we dropped off the three passengers in Harlem, the lady yelled "Now can I transfer?", which drew a groan from me, because that would delay my trip home. The driver and the aide said no, and it turns out we had another pickup before heading into Queens. It turned out the poor woman in the wheelchair was going to Brooklyn. All the way into Queens, she was yelling "I want to go in a seat!" and then when we got into Queens, she started yelling "This doesn'xwas not a happy camper, and she made no compunctions about showing it -- for the next few days. I knew it wasn't my fault -- I just happened to be there.

Later on that week, I had an appointment at Cornell, which is right over the river from Queens. but our 11:45 pickup came at 12:30 and, instead of going home across the river to Queens, we filled the bus with pickups and drop-offs all the way at the southern tip of Manhattan. We had left the house a little after 8:00 for a 9:30 appointment [for which we were early], and should have been home by 12:30 the latest. We came in the door at 4:10pm. The ride on Access-a-Ride in a wheelchair is far from relaxing. First of all, I am in terrible pain from these braces [which will finally be changed out in two weeks] and it's as if Access-a-Ride never heard of shock absorbers. The ride itself is hell.

The bright spot was Louise taking me out last Sunday to Panera and then to Red Mango for the best frozen yogurt! I'm basically housebound except for about once -- or sometimes twice-- a month that my angel Judy Lewis comes to get me out. And Louise finds what little free time she has to come by on a weekend and get me out. The aides don't want to go out, except to do errands, and they don't want me along. So I hear the weather reports of beautiful sunny days and know I can't enjoy it except for doctors' appointments or the one or two outings a month I have with Judy or Louise. Back in 2006 and 2007, I had a lot of people who would come over and take me out of my apartment. But those people have faded away.

Everything seems to be breaking down at once. I have been in virtual darkness after sundown for the last two weeks. First, my table lamp broke, and I ordered a set of "sunlight lamps" which sounded great in their online descriptions. But in reality, they were all wrong. I had waited several days for them to be delivered. I am in the middle of the shopping capital of New York, but with nobody to go to the store with me, I am forced to shop online. Then my ceiling fan/light fixture in the hallway blew and when the doorman replaced the light bulb, it didn't work. So I think i need a new ceiling fan/fixture. Now, I finally received the new table lamp I ordered. And, on top of that, my super tells me I need a new bathroom sink [the stopper is broken] and a new toilet. I bought a new faucet at his suggestion for the kitchen sink [which won't stop dripping] and now he tells me I need a whole new kitchen sink. Mind you, I still have to do it on the cheap because after I die, this apartment goes to Medicaid. And my case being pending, I'm told that any benefits I have received since May 1, will have to be paid back if I don't get my Medicaid back. Where do they think I am going to get the money to pay them back? Just aides alone work 168 hours a week at $11.00 an hour. You do the math, because I'm too tired to multiply.